93.Can blood tests be wrong Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes part 2

Can blood tests be wrong: from Noeleen on 2007-04-26

Hey I'm just wondering I went to the doctor I have been sick for a few years now catching alot of infections from kidneys to flus to Bronchitis infections, I have some kind of infection every month, this year has been the worst ever!

I've spent most of the year fatigued and really feeling out of sorts. I went to the Doctor last September when I first felt sick I had a really bad flu and I started to break out in rashes like hives. Since then I have been getting hives and taking anti-histomines prescribed by my Doctor. I had a blood test in February in hospital I had to go in I got really bad pains in my chest and numbness in my arm I found it really sore to breath but I got all checks done and they said my heart was fine and my 6 blood tests were clear.

I had my blood tests done agian 4 weeks ago and it came back with low Iron levels around 11.3 the nurse said it wasn't by much and I had high Cholesterlo at 5.1 I'm 29 and slender she also said this wasn't to worry about. After that test I got another blood test to test me for vitamin B12 deficiency and folic acid and coeliac test. After 2 weeks, today I got the results back that my vitamin b12 was normal and the coeliac test was under 12. The nurse asked the doctor and he told me to come back again in 3 months for another blood test.

I'm very frustrated as she gave me no information what to do. Do I stop eating gluten free products for the 3 months or do I keep eating as normal until then. I'd really appreciate advise on this. They are not forthcoming with information and I don't understand what's normal and what says I'm Coeliac. I've been suffering also with constipation for around two years and I am attending the hopital next month for a colonoscopy. I also have been suffering with haemoroids with blood every so often but not much and can be sore.

I hope this makes sense!!

I'm from Ireland and live in Ireland are the screening tests different is under 12 bad? I would just like to know if I am coeliac or what's wrong with me.

Can anyone help on this?

Noeleen

Can blood tests be wrong: from Peter on 2007-04-26

You need to discuss this with your doctor. Work out what questions you want answered and make another appointment to see your doctor. Explain that you need to know what he is testing for, and what the tests might indicate. Ask for the tests to be explained to you. Ask if you should consider changing your diet.there are several tests that can be used to help diagnose the coeliac condition, so without knowing which test the figures convey very little information.

Can blood tests be wrong: from Noeleen on 2007-04-29

Thanks for the advise Peter much appreciated.

Noeleen

Can blood tests be wrong: from Mary Jones on 2007-05-14

My GP has just informed me that Coeliac tests are done in 2 parts and only if the first is postive do they follow through with with the second part. My first stage positive for the antigens but I dont really understand what this means- can you enlighten me - GP says it is likely I have Coeliac - my sister has for 9 years

Can blood tests be wrong: from Peter on 2007-05-14

The test is for antigens which your body would produce if mounting an immune response to gluten. If these are detected it confirms that your body is doing this. That your sister has already been diagnosed as Coeliac greatly increases the chances that you also suffer this condition.

Can blood tests be wrong: from Shelley on 2007-05-19

Ive just had the blood tests done for Celiac disease and am awaiting the result. I have decided, though, that I will eat a gluten free diet no matter what the results are. If I improve--I have all the symptoms, and have had them for years--then I'll know gluten is the culprit.

I have been eating gluten free for only 3 days, but I am not bloating up like I always used to. While I approach this massive change to my diet with more than a little apprehension, I am willing to do whatever I have to do to get better.

Can blood tests be wrong: from Roxann on 2007-12-02

Here's my question/ story:

I've been an undiagnosed Celiac sufferer for 4 years. My mother is also an "undiagnosed Celiac" but we both have responded extremely well to going gluten-free. I am now the proud parent of a 9 month old daughter and want to officially know if I have Celiac's (she will remain gluten-free until 1 yr or older).

But I still haven't felt "good" (low energy, frequent bowel changes, mood swings, gassy/ farty) and recently have discovered that wheat/ gluten has been slipping into my diet (used Johnny's seasoned salt, raspberry flavored Emergen-C) for months. Had one blood test ~3 1/2 years ago but came back negative. My new doctor wants to test me with a few blood tests again.

Should I go ahead with these blood tests? I've read that I should have been eating ~4 slices of bread daily prior to testing for 3 months?

Is it worth it to go ahead with these blood tests now? Don't think I'd ever be able to go back to eating wheat/ gluten full-time for 3 months.

Thanks for any advice.

Roxann

Can blood tests be wrong: from Suvajra on 2008-11-07

My father has been diagnosed as celiac. I had stomach problems for years and recognised I was probably celiac too. I cut out all gluten and felt an immediate change - within one day no flatulence. I've been on a Gluten free diet for over two years now.

My doctor doesn't believe I am celiac and to prove it he gave me a single blood test which came back with a negative result. I understand from all your posts I needed to be on a gluten inclusive diet to show an antibody reaction.

Three questions.

1. How long should I be on a wheat diet before re-testing?

2. Which blood tests should I request?

3. Where can I find the relevant literature to give my doctor showing him that a blood test on a gluten free diet will show a negative result?

Suvajra

Can blood tests be wrong: from Peter on 2008-11-07

This first paper is very much to the point.

Tursi A ; Brandimarte G ; Giorgetti GM Affiliation: Department of Emergency, "L. Bonomo" Hospital, Andria, Italy. antotursi@tiscali.itTitle: Lack of usefulness of anti-transglutaminase antibodies in assessing histologic recovery after gluten-free diet in celiac disease.Source: Journal of clinical gastroenterology (J Clin Gastroenterol) 2003 Nov-Dec; 37(5): 387-91Additional Info: United StatesStandard No: ISSN: 0192-0790 (Print); 1539-2031 (Electronic); NLM Unique Journal Identifier: 7910017Language: EnglishAbstract: Gluten-free diet (GFD) plays a key role in the treatment of celiac disease (CD), but it is difficult to evaluate the effect of GFD on the improvement of villous architecture using sensitive, non-invasive tests. Aim of this study is to evaluate anti-transglutaminase (tTG) antibodies in the follow-up of CD to detect histologic recovery. We studied 42 consecutive patients with CD. In all the patients anti-tTG antibodies (evaluated by the enzyme linked immunosorbent assay method) and EGDscopy with multiple bioptic samples before GFD and then 6, 12, and 18 months after GFD were evaluated. For comparison, a sorbitol H2-breath test (H2-BT) and anti-endomysium (EMA) antibodies test were carried out concomitantly. Anti-tTG results were positive in 36 of 42 patients before GFD (80.95\%), while they were positive in 11 of 34 (32.35\%), 1 of 17 (5.88\%), and 0 of 6 (0\%) of patients with a persistence in histologic lesions 6, 12, and 18 months of GFD respectively, without any correlation with persistence of histologic lesions (P = NS). Also EMA failed to show correlation with improvement of histologic lesions. They were positive in 31 of 42 patients before GFD (73.80\%), while they were positive in 18 of 34 (52.94\%), 3 of 17 (17.64\%), and 0 of 6 (0\%) cases 6, 12, and 18 months of GFD respectively (P = NS). Regarding sorbitol H2-BT, it was positive in 40 of 42 (95.24\%) patients before GFD, while it was positive in 31 of 34 (91.17\%), 13 of 17 (76.47\%), and 4 of 6 (50\%) of patients with a persistence in histologic lesions 6, 12, and then 18 months after GFD starting (see Fig. 2, infra). So, anti-tTG and EMA were ineffective in assessing the histologic recovery at each follow-up visit (P = NS), while sorbitol H2-BT seems more effective than anti-tTG and EMA in this field (P < 0.0001 sorbitol H2-BT versus anti-tTG and versus EMA at 18 months after gluten withdrawal). Thirty-eight of 42 (90.47\%) patients adhered to a strict GFD. Four patients were found to have occasional dietary transgression, and in all we noted a progressive decreasing of anti-tTG after 6 months of GFD and negative anti-tTG after 12 months of GFD, but sorbitol H2-BT persisted being positive during the entire follow-up. Intestinal damage persisted during the follow-up, despite anti-tTG and EMA negativity, and worsened in the presence of dietary lapses. Anti-tTG does not seem effective to assess histologic recovery in the follow-up of celiac patients after they have started GFD due to its poor correlation with histologic damage.

McGowan KE ; Lyon ME ; Loken SD ; Butzner JD Affiliation: Department of Pediatrics, Calgary Laboratory Services, University of Calgary, Calgary, Alberta, Canada.Title: Celiac disease: are endomysial antibody test results being used appropriately?Source: Clinical chemistry (Clin Chem) 2007 Oct; 53(10): 1775-81Additional Info: United StatesStandard No: ISSN: 0009-9147 (Print); 1530-8561 (Electronic); NLM Unique Journal Identifier: 9421549Language: EnglishAbstract: BACKGROUND: The aim of this study was to retrospectively examine how positive IgA-endomysial antibody (EMA) test results for celiac disease were being interpreted and acted on by physicians in the Calgary Health Region. METHODS: We reviewed consecutive EMA test results, with or without a serum IgA, obtained during a 17-month period. Seropositive tests were cross-referenced to the surgical database to determine the number of patients who underwent intestinal biopsy and the results of the biopsy. We sent questionnaires to the ordering physicians of positive tests with no record of intestinal biopsy. RESULTS: Among 11,716 EMA tests in 9533 patients, 349 results were positive in 313 patients (3\%). Intestinal biopsies were performed in 218 (70\%) of the seropositive patients; 194 of them were diagnostic of celiac disease. Celiac disease was also found in 10 EMA-negative patients. Of the 109 positive tests performed in 95 patients with no subsequent biopsy, 28 had appropriate indications to not perform a biopsy; the most common reason being that the test had been ordered to follow up on a previous biopsy-proven diagnosis of celiac disease (n = 21). For 33 other positive test results without a subsequent biopsy, management appeared to be inappropriate, most commonly (n = 21) because of a recommendation to follow a gluten-free diet despite lack of a tissue diagnosis of celiac disease. For the remaining 48 positive EMA results, administrative issues prevented evaluation (n = 19), the patients refused further evaluation (n = 11), or physician surveys were not returned (n = 18). CONCLUSIONS: Celiac disease affected 2\% of patients, with a similar prevalence in male and female patients. Most positive EMA tests (77\%) were appropriately managed by physicians. Beginning a gluten-free diet without biopsy or failing to follow up on a positive EMA test remain common errors of management

Can blood tests be wrong: from Suvajra on 2008-11-10

Peter,

Many thanks for those two papers. The first one should make it quite clear to my GP that a negative result does not necessarily mean I am not celiac.